My Voyage Through Early-Onset Alzheimer's

Nadir

Yes, I’m still here. It’s May and I know I haven’t posted anything since the end of March. My ability to write is still intact though I see that I ramble. My ability to move around and walk is impaired. My balance is way off, and I often feel like I’m going to fall when I turn around. Chewing and swallowing is now very hard to do especially foods that are dense. I still remember how to draw and take photographs, although I’ve been doing that less and less.

Everything has changed. Now Theresa is gone because the Coronavirus has forced everyone into isolation. She was concerned she might bring the virus here. I haven’t seen her since the end of March. She still texts me occasionally and I text her back.

My husband hasn’t been going to work. The company produces trade show exhibits for the pharmaceutical industry, and has furloughed two thirds of it’s workers. There are no trade shows scheduled anytime in the foreseeable future. At first I think he was in shock. He went from working nine hours a day, crunching numbers, in contact with the designers and sales department to no work at all. He has now been taking care of our house, painting the main hallway, making sure the house is maintained. He takes care of me, does all the cooking and shopping, and makes sure to take me out every day for a walk (except when it’s raining). He holds my arm when we walk, navigating us both on the street where some people don’t wear masks, moving us into the bike lane when people go by who are oblivious to keeping a distance.

I didn’t write in April so I’ll go backwards and remember the highlights of our life in isolation. Wayne prepared Passover seders for both of us and we read from the Haggadah on both nights. I was able to teach him how to make choroset, which symbolizes the mortar the Hebrews needed to work during their enslavement. We ground the walnuts in the Cuisinart, and shredded an apple, mixing them together with a little honey and added a little red wine. This makes a paste that is spread on matzoh and eaten like a sandwich. It’s a recipe my late father taught me. My wonderful synagogue delivered seder boxes with chicken and potato kugel and pickled salad. Wayne made a chicken and matzo ball soup. We ate gefilte fish too. All the trappings of a Pesach seder. We texted with our kids and sent photos. Caarin, my niece, gave our daughter Mimi her matzoh ball recipe and Mimi sent photos of her success making them. On the second night rabbi Scheinberg conducted a seder online via Zoom and read from the Haggadah, taking turns with some of the zoom attendees. At that point we didn’t know what was happening with his company, and I guess we hoped that he would still be able to continue working.

Then out of the blue, my dementia mentor, wrote me an email that she would no longer hold weekly meeting with me. She wrote that over the past three years she has become more of a therapist than a mentor and that her role is to mentor and help me learn ways to work around my dementia. She wrote she has listened rather than help me. I was stunned. After three years I felt we had formed a relationship and that we were friends. Zoom chat friends. I’m still reeling from this.

I still zoom chat with Jackie Pinkowitz, the chair of Dementia Action Alliance. She isn’t fazed by my lamentations. She knows that I push myself and that I am not a quitter. She offers encouragement. Encouragement is key. And I have zoom chats with Tim who was diagnosed with Lewy bodies. He told me I am too hard on myself. Said I need to be kinder to myself. Jackie has said that to me as well.

It’s just that this illness has taken away so much of me; my resilience, my strength and sadly my faith. I used to feel like G-d was protecting me and my family. I didn’t fear. I was tough. A fighter. Confident that if things didn’t work out one way, I’d find another way. Now the simplest things are so hard for me to do. Everything is off. Out of sync. And I am full of fear. That’s because this disease is treacherous. It takes and takes. piece by piece.

When I was young I would never have believed that I would develop Early Onset Alzheimer’s. I thought I’d live to a ripe old age with all my marbles. I imagined myself near the end of my life in Tangiers walking along the shore on the Mediterranean sea, holding hands with my husband. I can picture it but I will never live to see it.

I didn’t know that depression is related to Alzheimer’s until I read about this after I was diagnosed. I had recurrent major depression as an adult. I went on antidepressant medications when I was in my forties and always experienced side effects. Yet they were helpful and stabilized my mood swings for many years. I had no idea though that the medications I was put on were anticholinergics and that they kill brain cells. Anticholinergic medications are now found to contribute to brain inflammation, a potential contributor to dementia.

The first neurologist that diagnosed me with Alzheimer’s (September 2016), said that my depression was not primary but neurological. I surmise that my recurrent depressions that started almost twenty years ago were the descent to dementia, the beginning of this illness.

I keep trying to write, to make sense of this but I can’t. How can I understand why my legs are becoming weak and wobbly? Why I am always wondering and asking my husband, “what’s next to do”? Why I hear my self babbling incoherently as soon as I wake up? I want to still be here, but the me I used to be, the person who I used to know is disappearing. The person I was is gone now, replaced by an alien being. Everything seems hyperreal. Birds look like tiny dinosaurs. Plants and trees and flowers all look like creations from another world. Colors are so intense that they look almost artificial.

Nadir means the lowest point in a persons fortune. It’s a word I learned when doing a crossword puzzle and indeed describes my dilemma. I don’t want to be this burden I have become. I know where this disease goes and I am progressing faster now. I am aware of how distorted my brain has become. I am aware of how I feel, and how depression which I fought has turned into apathy in Alzheimer’s. I am cognizant of how hard it is to keep pushing myself. Yet that is what I do.

Old memories come out no where. Usually they are snippets of my childhood. My obsession with television, the black and white console in my parents living room. Sneaking in to watch movies late at night after my parents went to bed. My father tried to get me to stop doing this, and took a fuse out of the fuse box. I remember feeling for the fuse and accidentally sticking my finger in the hole that was supposed to hold the fuse. He tried to stop my late night television watching by taking a tube out of the television. I took a screwdriver and unscrewed the masonite backing behind the tv, and somehow figured out how to get the tubes back in, and made the television work. I was smart and sneaky.

I remember the movie The Incredible Shrinking Man written by Richard Matheson . I watched it on tv when I was a child and it had a lasting impact on me. It tells the story of a man who is exposed to a radioactive pesticide cloud and starts to shrink. First he shrinks a few inches but after a while he is three feet tall. His condition becomes known to the public. when he learns there is no cure for his condition, he lashes out at his wife. he shrinks to the point he can fit inside a dollhouse, and has a battle with the family cat, which leaves him alone and lost in his basement. he continues to shrink to smaller than average insect. Towards the end of the movie he fights off a gigantic spider for a piece of cheese. He accepts his fate and is resigned to the adventure of seeing what awaits him in even smaller realms.

He speaks his final words, ” I had conquered. I had won. I lived. But even as I approached the dry flaking crumb of nourishment, it was as if my body had ceased to exist. There was no hunger. No longer the the terrible fear of shrinking. Again I had the sensation of instinct. of each movement, each thought tuned to some great directing force. I was continuing to shrink, to become…What? The infinitesimal? What was I? Still a human being? Or was I the man of the future? So close the infinitesimal and the infinite. Suddenly I knew they were really two ends of the same concept. The unbelievably small and the unbelievably vast eventually meet, like the closing of a gigantic circle. I looked up, as if somehow I could grasp the heavens, worlds beyond number. G-d’s silver tapestry spread across the night. And in that moment I knew the answer to the riddle of the infinite. I had thought in terms of Man’s own limited dimension. I had presumed upon Nature that existence begins and ends in Man’s conception, not Nature’s. I felt my body dwindling, melting, becoming nothing. My fears melted away and in their place came acceptance. all this vast majesty of creation, it had to mean something. And then I meant something too”.

He knows he will shrink to eventually atomic size. No matter how small he becomes, he concludes that he will still matter in the universe because to G-d there is no zero.

He says, “I still exist”.

I think I am remembering this movie now because this is an analogy for what I am going through. My brain is shrinking. I am changing. I am disappearing, I am looking for justification for why this happening to me.

My daughter and her boyfriend visited us just to take a walk together. They didn’t come into our home because of the Coronavirus. My husband usually holds my arm and helps me walk, but in order to walk beside my daughter (six feet apart), I had to walk by myself. My husband helped me cross the streets, and then my daughter switched with him and walked with me.

Obviously I have progressed in this disease. I need help getting through each day. There are so many things that I can no longer do. My strength and ability to navigate through the world is severely compromised. Expressing myself is often very hard to do. Sometimes I just point, and my husband seems to understand. It’s so frustrating losing words. I was a writer. I loved words. I loved stories. I loved movies. Now I narrate in texts to my daughter, sending her my daily selfie, telling her that I am finally dressed and ready, telling her about what is on the calendar for the day – do a laundry, what the date is, that her dad has just taken me for a walk, that when I returned the door to the dryer was open and the clothes I thought were drying were still wet. How I turned the dryer on again to dry my clothes. She wrote back “What a fabulous story. Thank you.” I see the humor in it and I see the tragedy too.

I don’t know how to end this, so I’ll end with a rainbow and some drawings of the people I’ve loved and some of the friends who’ve stood by me.

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18 thoughts on “Nadir”

So generous of you, Mina , to share again. Even though it sounds as though it is difficult for you to do so. This virus making your struggles even worse in some ways, better in some ways I suppose since Wayne can be home with you.
Your drawings are so strong . How beautiful that you can persevere to draw.

Thank you Geanna for writing again. You are spot on to understand that the isolation caused by the Coronavirus makes my struggles harder in many ways, and that having Wayne here does help. I’m always amazed that I can still draw and capture the quality of the person in my portraits, which I think is the case with this drawing of Wayne. Please say to Eric for us. I saw on Facebook that he is part of a band and playing guitar.

I continue to read and save your posts. You have an incredible gift for writing and your honesty is beyond reality. You have helped me understand the person with dementia with your words. I appreciate you letting us see into your mind as well as you are able to describe it. Your writing is much better than you know. I have shared your website with others in an online course I’m taking on using art with people who have dementia. I’ve told them about your lovely artwork, photos, and amazing writing. I hope they visit you here and as artists encourage you. I want your family to someday turn these writings into a book. I think it would be so helpful for people trying to understand. I look forward to your next writing.

Hi Deborah, Now I connect your name to other responses I’ve received from you Zuzu. Thank you for all your encouragement and support to keep writing and posting my artwork. I think early onset Alzheimer’s is different from late age dementia. There is more awareness and the frustration to communicate and still be connected is more acute. I think that’s because the illness moves more rapidly through the brain.Of course there is the saying that if you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s. Each person is affected is different.
Glad you have shared my writing, photos and artwork with others in your online course. While I have tried to get the blog published as a book, I have not found a publisher willing to do this.
-Minna

Thank you Vicki for writing to me and staying connected through my blog. While your mom Trudy developed Alzheimer’s in her mid eighties, as you know I have developed this devastating illness in my sixties. Like your late mother did, I am constantly fighting the effects of it’s devastation.

Oh how I miss you Minna. I learn so much about you every time you post. Your honesty, and eloquence are a gift to us all. I’m sorry it’s so painful. It’s so difficult to see someone you love going through this. I hope we can have a socially distant visit soon – now that the weather is warm again. I miss walking and talking with you on my arm. Love you love you love you.

Thank you Caarin for holding my hand through this relentless journey I am on. Not being able to see you for what now feels like an eternity has been hard.
Sending LOVE to you and Eric and Charlotte and Jasper.

Thank you so much Minna. You give me a perspective of living with alzheimers that is very insightful for me. It helps me to understand what my Barbara goes through. She is declining quite rapidly now. But she remains happy so that’s good
Keep Lookin Up
Jack

Hi Jack,
Thanks for writing to me and for continuing too read my blog. I wish I could see Barbara and understand what you mean when you say she is declining rapidly now. If you are willing to tell me more, can you describe how this is happening?
Best wishes,
Minna

My dear unmet friend I do not think that I agree that you are too hard on yourself now. I think you have probably always pushed…demanded much from yourself. Not unusual for a person of great talent. I firmly believe that creative people are blessed/cursed with something in their very makeup that makes them able to create on a level beyond most.
You have not stopped being creative. Your art is marvelous and your words touch my soul. I do not see a decline in either but rather a distillation. What you still communicate is your world just as you always have. You reflect the changes made with clarity and honesty. Is that not what you have always done?
You continue to tell the story of you….the world through your lens….a world which presents difficulty, sadness, frustration and requires a great deal of effort.
You are not going to float through this illness. Others may be able to but you are going to tackle it head on. That is who you are. Others may see it as being hard on yourself…I see it as being Minna…the friend I have never met but admire and enjoy!

Your candidness about living with Alzheimer’s is reallly a gift to those who don’t quite understand what happens to a person living with the disease. So thank you for sharing such personal insights.

Something that stood out to me in your post, Minna, was this: ” The person I was is gone now, replaced by an alien being. Everything seems hyperreal. Birds look like tiny dinosaurs. Plants and trees and flowers all look like creations from another world. Colors are so intense that they look almost artificial.” I would like to tell you about a series my church is studying right now. It’s called “What’s After Life?” You can access it at http://www.whatsafterlife.com.

What I found in your statement goes along with people who had a near death experience describing heaven. The intense colors, some they’ve never seen before, too beautiful to even try to describe. Flowers, trees, grass that emits pure love like they’ve never felt or experienced before. Everything around them was LOVE the kind they didn’t know existed. Sort of like you saying it looks like it’s from another world.

I believe G-d is giving you a glimpse into what heaven looks like. He doesn’t want you to be afraid or downcast, even though this dreadful disease makes one feel exactly that way.

I want to encourage you, Minna, to trust G-d knowing he has a place for you with him for eternity. He LOVES you more than we could ever imagine someone loving us. My prayer for you,my friend, is to trust HIM who knows all things and who has the perfect plan for you.

I agree, life isn’t fair a lot of times, but He who is faithful is always fair.